I rarely write about my daughter. She also has a CP diagnosis, but her condition is so mild on the surface that it’s not noticeable to an untrained eye. Her brother is the one who gets five therapy sessions a week. Her brother is the one who needs help walking, has all the durable medical equipment, etc. It’s not that I don’t think of her issues myself. It’s just that they are less obvious. Until she has a meltdown.
Her difficulties are more behavioral, though she does have some physical limitations. But the behavioral side of things, well, let’s just say it could be used for torture purposes. Where do I start? She has tactical and vestibular sensory sensitivities, meaning things she touches either stimulate her or repulse her, in an extreme way. So if that Hello Kitty sock she loves so dearly is just a millimeter off of where it ‘should’ be, major catastrophe. It goes on and on like that. I won’t wear you down with example after example. I’m already worn down enough for all of us. I had a huge fight last year with our regional center to get her the specific therapy she needed, and it was well worth it. she is a different child than a year ago. But not without lingering issues.
To combat this I have employed some techniques that help, most of the time. I got her a book with a panda in it (she loves pandas), and the panda has a ‘calm down place’ where he takes a deep breath and counts to three. She will do this as well, when I can get her to stop crying and screaming. When that noise level is amped up, there is no hearing me at all. Suffice to say that I have arrived at the point where I almost don’t care what her given problem is any more. I just can’t deal with the noise. My own ears hurt so much they ring, long after the kids are in bed. Thank goodness for email. If I had to talk to people on the phone more than I do, well, I wouldn’t have any friends left.
Ok, enough venting. I want to hide half of the day, or more, and that makes me feel guilty. My favorite part of the day is when she has finished screaming to me from her bed at the crack of dawn, and I have managed to get her into bed with me where we can cuddle up together. For just a few minutes, she is calm, she allows me to love her without condition, and I am in a calm down place of my own.